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Real life stories

Chandani's story



What started as fever and chills, eventually turned into lymphatic filariasis (LF) and Chandani was struck by this disease at an early age. Chandani's mother took her to a local doctor but she was misdiagnosed, and was therefore prescribed ineffective treatment.  The fever did not abate, and Chandani's left leg was not only swollen but excruciatingly painful.

The treatment was not only ineffective, but also very expensive. Her father, as a daily wage worker, was already struggling to provide for his wife and four children. The cost of Chandani’s treatment and education added to his burden.

Chandani recalls the emotional and physical pain she had to endure in school and at home. Peers at school would tease Chandani about her swollen leg and call her names and the one that stuck was ‘Phool Phoolani’, the Swollen Flower. Chandani was unable to cope with her illness, the bullying, and the protracted and ineffective treatment..

As a last-ditch effort, Chandani’s father decided to take her to Samastipur, where the hope was that a bigger city meant a better doctor. Finally they received the correct diagnosis, but they were left devastated at the news that there is no cure. Social prejudice and financial woes hovered over them like a dark cloud.

Then one afternoon, a Lepra Accredited Social Health Activist (ASHA) made a house visit to Chandani's family. “My life changed the day she stepped into my house.” says Chandani, who now affectionately calls the ASHA Didi, meaning elder sister.

The ASHA worker reassured Chandani and her family that, with the right treatment, Chandani’s quality of life would improve and she could resume her studies. She told them about Lepra and how the organisation helped people regain their health and dignity. True to her word, she came back the next day with Navneet, the Restoring the Lives of Forgotten People (RLFP) project worker.

Navneet explained the importance of self-care and started Chandani on Mass Drug Administration. Chandani’s leg was infested with fungus and it had been a long time since she wore footwear. Navneet came again the following week, with special footwear and to follow-up, ensuring that Chandani was following the self-care regime and motivating her to persist with it. Navneet and the ASHA did kept an eye on Chandani, who herself was diligently following the instructions, with the foot care protocol twice a day and taking her medicines regularly.

With the fungal infection gone soon after, the foot swelling also started to abate. Clinical and emotional support from Navneet helped Chandani regain her self-confidence and restored her life without pain and fever. She was infused with a newly found courage and young Chandani was ready to take on the world again. Chandani went back to school and completed her high school with flying colours.

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